Month: June 2015

I’m writing from my iPhone, supine on the couch. It’s the first time doing this because up to now I’ve experience so much frustration typing on this keyboard that the idea of writing a whole blog post on it felt out of the question. I could just imagine the many many predictive text failures and me growing angry and tired. But, alas, I can barely move. I don’t feel strong enough to sit upright and feel comfortable. All my limbs are weighted, my head feels like a bowling ball supported by a twig. All my appendages hang like deadweight to the floor. Mostly I feel really brittle.

I had a bunch of nerve-racking dreams last night with intermittent nightmares. I wake up with 5 or 6 vivid memories of all these scenes playing out in my mind. Many times it’s in the middle of the night and I wake up to the sound of my own voice saying “Mmmmmm” but unable to get the word out, my jaw straining and my mouth tight. This is also happening in the nightmare; I’m unable to speak, often unable to move, and I’m trying to call out. The “Mmm” sound is for Monty. He is who wakes me out of the dreams. Almost always I awaken, sweaty and afraid, and next to me is Monty, standing close to the bed panting loudly. A few times he’s pawed at the bed or whined to get me out of it. He is my relief. I pet his head and slow down my mind, my breath. He grunts and quickly goes back to sleep. I’m continually amazed by his visceral nature and intuition. He’s more than a therapy dog. He’s a rescue dog.

So many times, when I fall back to sleep, I return to the terror or anxiety or the inability to move, or be heard. Sometimes picking up right where the last dream stopped. Even when they’re not nightmares, they’re usually taxing and filled with angst. Or I’m just too sick to keep up with the characters. This morning just before my eyes opened, I was trying to keep up with my brother and sister who were packing up and moving from our house. My brother was mad that someone had dirtied the bathroom walls and I had a washcloth, sluggishly trying to wipe them down but struggling with my shaky arms. I could barely complete the task. I explained I was trying my best and to go easy on me, that I was exceptionally weak. ‘Why are you so weak?’ he asked, looking me straight in the eyes. ‘I don’t know’ I said discouraged, returning his dead pan. That was it. I opened my eyes to Monty on the bed and my whole body aching, but worse was the heaviness over me. It was so hard to move my cement limbs. It took way too much effort. As I struggled to get out of bed and merely stand up I thought “Ah, well, that explains the dream.”

In fact I think my dreams have deeper meanings than just their physical implications, mirroring my condition. But certainly my symptoms heighten the scenes and details. A while ago I dreamed that metal shards were sticking out of my kneecaps and my legs had a bunch of broken glass stuck in them. (Having glass shards in my skin is a recurring detail) When I woke all my joints were aching, most of all my knees for some reason. The rest of me had that general ache, and it was interesting how my subconscious was using those symbols to reflect my physical reality. Anyway, when I think back on them later, I think, did I get any restorative sleep? I wake up feeling like I ran a horror marathon all night! Not all nights, but most. And it’s interesting to me. Many of my days aren’t filled with a lot of action, but it’s like I have this whole other life when I go to bed at night. And sometimes it’s really amazing. This year in particular, I’ve been able to ‘decide’ to fly and I do it a lot now. It truly feels like I have actually flown, I am amazed and exhilarated in the dream, knowing it’s an incredible thing. As soon as I believe I can (like thinking a happy thought in Peter Pan)!or remember that I did it in another dream, I do it. And I experience it fully.. Looking down at roofs of houses, flying and landing onto branches of tall tress. Last night was theatrically hilarious: I flew real high up above this pool, turned upside down with my arms out like Superman and nose dived while doing full 360 spins into the pool. And I knew that I looked like those Olympic divers who land perfectly into water without hardly making a splash. I was showing off, and it felt great! This was just before I realized we had to leave and I was heavy and weak trying to get out of the pool. I didn’t seem to function on dry land. That flying part was fun though.

Unfortunately the rest of the day so far has remained in a crash state. Extremely weak and fatigued, super dizzy every time I stand up, with my hearing becoming totally muffled and my heart doing all kinds of weird things. I’m short of breath and winded even though I’ve barely moved at all. I was supposed to go to a wedding which I was looking forward to tonight, but I knew exactly what would happen if I pushed it and went, so here I lay, with Monty next to me waiting for any movement that looks at all promising .

Days like these are hard, but they used to be much harder. I’d fight them, racking my brain for a way to make it work– to keep plans, to fulfill my own or others expectations, to demand that I was in control and not my body. If I gave in and said no, I’d torture myself imagining all the fun I was missing, and grow angrier at my circumstance. I’d feel hopeless and my mind would exaggerate the ‘unfairness’ of my life with this disease. But saying yes always yielded the same bad result–a deeper crash and an extended amount of recovery time. Which would make me miss out on even more. Now I feel more in touch with my body–I usually know deep down whether or not I can or should do something, and when the answer is no, I spend as little time harping on it as I can. I’ve practiced surrendering faster and divertig my attention to what I can do while I’m in whatever state I’m in. And honestly there is plenty– the iPhone alone can busy you for hours. Yes it stings to miss out, but my wisdom in making the better decision and my acceptance with whatever that is has grown. I think with an illness like this it’s almost a lesson you’re forced to learn. The alternative is just suffering on top of suffering, and ain’t nobody got time for dat.

I’ve got two good books: A Return to Love by Marianne Williamson and Dance Dance Dance by my favorite Murakami. There is Mad Men Season 6 I haven’t seen yet. There are rain storms that continue popping up that I like to close my eyes and listen to. There is food in the fridge, (my mom texts me,) and there is the gift of time I’ve been given to rest and recover through days like this. And it wasn’t always that way. I have to reming myself what a gift that actually is.

As for the dreams, I’ll try to write them down, and since I’ve learned how to fly, perhaps I’ll learn how to shed my physical issues in that world too. Or I won’t. Either way, in this sedentary life of mine, sometimes those active dream-filled nights give me an adventure that invoke my mind and heart, and that’s pretty cool in itself. (Minus the glass shards.) Especially because I remember them so vividly. Anyway, sometimes it takes stepping back and changing the filter through which we see our experience to see all the treasures that it contains. For me that comes with writing, and having the chance to do that on a blog and being able to connect with people is one of the greatest gifts I have right now. So thank all of you for being so supportive and reaching out often. It’s been huge for me.

Now, back to nothing.

(Kiddinggg)

Health, Happiness, Recharging.

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I noticed an article in The New York Times recently titled “World Health Organization Urges More Care In Naming Diseases.” In early May, the WHO issued new guidelines for naming infectious diseases in an attempt to avoid damaging inaccuracies and stigmas that often the name alone can cause. They emphasized caution and symptomatic detail when choosing one; no animal names like ‘Swine Flu’ or peoples names like ‘Lou Gerrigs Disease.’ The new guidelines are a proactive attempt to prevent “Unintended negative impacts by stigmatizing certain communities or economic sectors.” They also mentioned that “The best practices apply to new infections…for which there is no disease name in common usage.”

Of course I read the article expecting to see CFS as a prime example of how damaging the effects can be from a poorly named disease. When Myalgic Encephalomyelitis was renamed “Chronic Fatigue Syndrome” in the early 80’s, it solidified an environment of dismissiveness, doubt, and critcism. A new stage was set: everything from the publics skepticism to the medical establishments cold shoulder were put into place, and little has changed in 30 years. Now if you had the misfortune of being sick with this disease, you were going to have two battles to fight.

I don’t just hesitate to say those three words out loud, I feel anxiety about it. Sometimes in doctors offices, I feel shameful saying it out loud, as if I’m confessing to how many packs of cigarettes I actually smoke each day. When I’m forced to say it, I swear I can hear any perceived validation deflate out of the room like a popped, zigzagging balloon. The words don’t hold any water on their own; they necessitate explanation that ends up sounding like defense. The words “Chronic Fatigue Syndrome” are not only misleading and insultingly trivial, they sound like a hypochondriacs failed attempt at making “tired” sound serious. And that seems to be the general consensus–that this is a “disease” where people simply feel sleepy all the time. Sleepy is for kittens and babies, and the primary symptoms of this are far, far beyond the bone crushing fatigue we experience. But this is the problem with labels, namely inaccurate ones. There is damage in what the words imply and even more from what they fail to say.

Here’s an example. A few months ago, the Institute of Medicine released a 600 page report devoted wholly to examining and better understanding CFS/ME. The committee not only provided new diagnostics guidelines and better disease management, it acknowledged the severity of the disease and put to rest the idea that it is at all psychological. Surprising many, they acknowledged the issues stemming from the name CFS and suggested a new one: Systemic Exertional Intolerance Disease. (SEIDS) It doesn’t exactly slide off the tongue, but it does finally address a discerning symptom of ME, which is the adverse reaction, down to a cellular level, to even mild exertion. This is far different than general fatigue. An exhaustive study like this one from an Institue with no previous involvement with the disease is a huge step in the right direction. The validation it provided for many sufferers was big, and the recognition of the staggering lack of science and funds to support it will presumeably apply more pressure at the federal level for a major increase.

I happened to read about the IOM’s report and name suggestion from NPR News, which I follow on Facebook. When I saw the hundreds of comments underneath the article I decided to look, and they weren’t anything out of the ordinary. Out of hundreds of responses, most of them were like this:

Thanks, Steph. I’m cured!!!!Totally! It’s like I’ve never met anyone with Diabetes who can eat copious amounts of sugar. It’s obviously bullshit!Em, you don’t have this.-MaryThis person actually doesn’t believe in Carpal Tunnel so I don’t know where to go from here.Hi Brianna, NOPE!

I know it’s a leap to project the reactions of a few Facebook commenters onto the general public. But in this case, these attitudes are not at all the exception. They represent a ubiquitous perspective most people have, whether online or in person. And maybe it’s redundant to say, but this is simply not a normal response to sick people. It just isn’t. It’s easy to see why sufferers hesitate to say the name out loud at all. Look at the environment we’d be entering into.

So, is this of any consequence? Does it really matter that the general public understand a disease? Not really, besides the demoralizing and crappy way it makes already sick people feel, no, it doesn’t. These people aren’t doctors, (most of them) and so who cares really? Besides basic human kindness, is this of any real concern?

The thing is, yes, I think so. Namely because this attitude pervades more than an uninformed public. This lack of concern, eye roll response travels all the way up to the federal level. Or maybe it trickles down from it. It’s hard to say anymore. Irregardless, by now the two are in some osmotic relationship– One fueling and informing the other. And when this is the attitude at a federal level, the effects are far more detrimental and consequential. $5 million allocated toward research for the last five years from the NIH is a detrimental effect. No cause, no cure, and zero FDA approved treatments are all the result of a disease not getting the attention it requires. Ironically, people who are sick with this don’t want attention at all. They just want to get better so they can have their lives back. But the shot at finding a cure relies heavily on the desire to find one and fund the science for it. When the perception of it is so casual and misinformed, it contributes to negligence– it prevents that possibility of a cure the way it has for the last quarter century.

I can’t help but wonder if the same outrage would exist from people if the disease went by its original name: Myalgic Encephalomyelitis. Would people scowl at its existence and call someone with the diagnosis a lazy-ass complainer who just needs to eat better? Would they judge them for being too sick to work? No, because those responses are not to a disease called Chronic Fatigue Syndrome. They are responses to feeling fatigued; one is fire cracker, the other is an atomic bomb. I realize all of this may seem a little petty. It’s just a name and there are bigger fish to fry when it comes to this illness. But I cannot help but wonder if what’s fueling the size of those fish is at the core, a simple misfortune of a name. It’s crazy to think that a label could do such harm or have such far reaching effects, but I don’t doubt it in this case. The evidence is right there, in this abnormal anger healthy people have against sick people as if they’ve chosen to be sick.

The point is not to harbor on issues I cannot change and I know that. Forward is the only direction now. But there’s such a lesson here in accepting things at face value and the harm it can do when we trust that we know better, before knowing much at all. It’s not just a poor social stigma we’re dealing with. It’s having a totally debilitating disease which costs the country roughly $18 billion a year in lost productivity, and the lowered chance we have at getting better because it just doesn’t appear or sound serious enough. This is where labels have much larger implications than just confrontational dialogue and ousting sick people. It’s bigger than that.

It makes me think of the way I perceive things and other people in my own life. How easily I make up my mind sometimes, one way or the other, about all kinds of things. I think of hearing or reading about issues and people and how fast and automatic a decision or feeling arises inside me. Sometimes I’m proud, thinking I know better about something, even when I hardly know that much at all. I think, if I never would have gotten sick when I was nine, were I still a healthy, functioning person 30-year-old, quick thinking and totally capable, and I heard of a “disease” called “Chronic Fatigue Syndrome,” what conclusion would my mind jump to? What feeling would I get? If all I had to go on were those three words, given that I wasn’t a doctor or otherwise well-versed in diseases, what would that label say to me? That name in its own twisted way, appears to say everything, enough for people to hold up their hands and say “I’ve heard enough, thank you.” Enough to feel decidedly one way or another without hesitation. Quick decisions and judgments like that do harm for all kinds of people with respect to all kinds of issues. I think we can learn from this one, and do better in the future across the board when it comes to making up our minds but remaining strictly at the surface.

Illness is not something to undergo alone, and anyone who has experienced it long-term will tell you that. When people email me about their families dismissing them, doctors referring them to psychiatrists, or marriages that crumble because someone is suffering from a disease with so few options and a world that just doesn’t quite “buy” it, I feel angry and discouraged. Mostly because I believe in the good-heartedness of people and I know we’re better than this. We can do better. Turning your back on someone who is sick is more than insult to injury. It causes its own tragic pain, separate and worse than the physical kind. It’s a new kind of loneliness, in a time you need people the most. After twenty years of being sick, the last five being the sickest, the hardest and most demoralizing part is battling something that so invisible to everyone else, all the while your whole world is crumbling.

The truth is even though it’s still massively lacking, there is more research than ever going on, and thanks to recent reports like the IOM’s and the Pathways to Prevention, pressure is building to invest more into solving this thing. My hope is that in the meantime people will be at least a little diligent before ousting an entire population of sick people as hacks. I hope if you’ve got major beef with the illness, you haven’t just heard the name and stopped there. To learn more about it, Cortjohnson.com is a great resource with vast information, including current and future studies and well-written dictations about their meanings. To those who are sick and discouraged, I hope you’ll read this and have faith that you’re not alone and that the answers will come. Progress is slow but it’s moving. Until then, please don’t lose hope. Worse than being sick is the thought that our life is over if we never get better. There is value to gain in all of these experiences, whether you’re sick defending yourself or dealing with someone who’s sick with something you don’t understand. But try and remember we’re all brothers and sisters here. We need each other. Maybe the history and politics of this disease hasn’t been our kindest hour, but we can still turn it around, even if it’s one less person casting judgment or turning someone away. As is the case with all social change, it always begins with one. We can all do better, and I’ve never lost hope that our future will be far brighter than our past.

Labels and categorizing are important, they exist for a reason. But in the case of CFS, and the WHO’s new guidelines for naming disease with caution, help exemplify the power and possible harm of labels. They must be chosen wisely. The CFS label was not, and it did an injustice to millions of disabled people. But it doesn’t have to stay that way. And despite how long and twisted the history is, it’s not ever too late to turn it around. Slowly but surely, I believe that change has begun and we’re on the cusp of something major. Despite my bad days, I believe in the awesomeness of humankind. We can do better. So let’s begin doing it now.